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Topic : When a Family Member Gets Sick

Nothing makes one feel more helpless than watching a child, spouse, or parent suffering. We understand. How do you cope with illness in your family?

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My sympathies

My hubby was dx with SCLC in june of this year,he has recieved 9 chemo tx's and 35 radiation tx's the Dr is giving him a two week "vacation" from all tx's and they he will do a complete body scan on the 25th of this month to see if the cancer has spread. &nbsp

My hubby seemed to tolerate all the tx's well with minimal side effects. now a week after his tx he is very sick with radiation burns to his esophogus,he is not eating and barely taking fluids ,he says it hurts too much to swallow!! &nbsp

I sit here day after day and watch my once vibrant hubby detoriate to skin and bones and with bearly enough energy to make it to the bathroom,I don't know how much longer I can be strong,but I know I have to be strong for him or he'll give up and die!! &nbsp

Please pray for me to stay strong and that the scans show no signs of spreading. &nbsp

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Sometimes the treatment seems as bad as the disease. I do hope the radiation and chemo are helpful to him and that there is good news on the 25th. Good luck

My Daughter

How do I live with the guilt?

I was diagnosed in August 2004 with Rheumatoid Arthritis complicated by Fibromyalgia. Now I am living with the guilt of changing the lives of all of my family members due to my illness. &nbsp

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All I could think of when the Rheumatologist diagnosed me, all I could hear in my head was Dr. Phil saying "This is going to be the changing day of the rest of your life". Boy did my life change! &nbsp

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I had been suffering for months with so much pain it was unbearable. I would get up in the morning and not be able to move for sometimes hours. When my feet hit the floor they would scream in pain. I would have to stand in the shower for 30 mins in hot water just to be able to get mobile. I finally had a diagnoses as to why, but boy what a downer. &nbsp

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I had owned my own bookkeeping business, but I could no longer keep up with it as I did not know from one day to the next whether I could get out of bed, whether I was going to need to eat 10 Tylenol 8 hours or go to something stronger like morphine. I was falling down on the job and it was time to let it go. Now I have caused my family financial hardship. Huge Guilt!! &nbsp

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The side effects of all the medications they have been trying, from Prednezone to Plaquinil and no relief but tons of side effects. Nausea, dizziness, drowsiness, stomach problems, not to mention the hair loss and I am only 40! More Guilt. &nbsp

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I have to ask my teenage kids (17 & 19) as well as my Mom and my Husband to do or help me do all the things that I used to do, make meals, clean house, shopping, laundry...you know all the things Mom's do...and some days I have to have my husband help me get dressed. I can't drive any more because of the reduced movement, pain and the drugs that I am taking so errands are left to my husband and teenagers. There is a lot left to my children because my husband works shift work, 12 hour shifts, 3 days, 3 off, 3 nights, 3 off, 3 days....this means that when my husband is on nights he is sleeping all day and working all night, and these days even more is left to my kids and Mother. Astronomical Guilt there. &nbsp

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My daughter had a nightmare that she had no friends because she was spending all her time doing things for me....Monstrous Guilt!! &nbsp

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Before all this began in January of 2004, my husband and I were HUGE golfers, skiers and hockey fans. We golfed every week, skied all winter and spend evenings at the hockey rink to cheer on the home team! We had planned to spend our retirement in a motor home visiting every golf course in North America and then buying an apartment across from the hockey rink when traveling was no longer an option. Well needless to say I have screwed that up. I can't golf, the ski's are gone and I can't go to the hockey rink because my joints can't take the cold. Without my income we will never be able to afford the motor home to travel in, and it is almost a necessity because my Rheumatologist is 8 hours away and I can't sit in the car for longer than 30 - 60 minutes at a time. This makes the 16 hour round trip a 3 - 4 day event because I need to lay down so much. The motel and meal bills are killing us with only one income, but we can't remedy it because we only have one income now, how Ironic!....Mountain of guilt here! &nbsp

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People stare at me because I am 40 walking like a 90 year old, I feel like sometimes my family are embarrassed at the stares...even more guilt. &nbsp

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I just don't know how to live with guilt. My husband, children and Mom all tell me not to feel guilty that they love me no matter what and they don't feel like I am putting too much pressure on them, but I see the glances, feel the pain when they roll their eyes when I have asked them to help me with something that means they have to stop doing what they want to do. I feel terrible always saying, "Would you mind?" "Could you please?" "I need help with ..." "I just can't do it today I am in so much pain"....and so on and so on. &nbsp

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Between my illnesses and the pressure of putting so much onto my families shoulders, I am feeling like I carry guilt the size of the world on my shoulders. I am a Christian and I do pray and I try to put these worries into the hands of the Lord, but it just isn't enough. &nbsp

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I would appreciate any comments about how to make this guilt more bearable or how to take the extra pressure off my family. &nbsp

after 12 years of marriage, discover husband has aids

My Mom, bless her, has been diagnosed with Parkinsons. My Dad is afflicted with altzheimers. Mom and Dad are 79 and 80, respectively. They have lived in the same house for nearly 30 years, and have had a marriage for nearly 60 years. Up to this point, they struggled with the common things couples struggle with, but remained committed to one another. My Mom, the stronger of the two now, has a number of tasks to shoulder, many of which she has no experience with, or is physically unable to complete. They have a woman clean the house twice a week, and a neighbor man comes around to mow the lawn and do handyman tasks.

I just came home, to where I live in California, from where Mom and Dad live, in Pennsylvania, after the annual trip I make to visit them Things have changed in the house this time, though. I found myself getting sad that my Dad was unable to drive, let alone ride a lawn tractor, which was once his favorite outdoor activity. He is mostly lucid, and can read a newspaper and talk intelligently about the articles he read. My Mom is unable to fold linens or to cook, though she's able to drive a short distance to see the doctor, or to take herself and my Dad to a neighborhood buffet restaurant, to eat one meal a day.

I guess my love for my parents and my compassion are real, but I'm concerned that they will both need a helper, in order to continue living in their house, and maintain health themselves. My Mom is worried and cried many times on my shoulder. She's scared. I found myself sobbing with her, but I kept my composure despite my sadness.

I hope that someone on this list can help me understand what Parkinsons is, and what Altzheimer's is--these are two diseases that I'm aware of (my Dad's mother and sister died with Altzheimer's), but need some education about how to deal with two parents and these illnesses.

I am numb, I am hurt, I am angry, I am confused, I am dying slowly inside.. We just found out a couple weeks ago that my husband has aids. We are waiting for his cd4+ and viral load count to come in. He has been fighting esophageal candidias since May,(he has had yeast problem since thanksgiving of last year, just took this long to get him to a doctor). He eyesight is quickly failing, and he has dementia, and is wasting and is anorexic...

He can't understand why I am angry.... Ihave people telling me If I want to pack up the kids and leave I have every right in the book.... but yet, I can't. This is their father. And even though I have been betrayed in the worst way possible.. I plan on staying to see him through this til the end.

Because of his carelessness, we are losing the home we have rented for 5 years, I have had to go on food stamps, and am now waiting on public housing, I had to go back to work at walmart, am juggling work, our 3 kids, their school and school work, him, and his illness, and doctors appointments and setting up his social security disability appointments.

I am trying to hang on, but he is making it really hard. He talks to me just awful,, almost like it is my fault that he is sick. Iknow this isn't him , it is the illness, but it still hurts even though....

He refuses to tell us how he thinks get got this, he does have body piercings and tattoos, but over the past few years I have caught where he has stored gay porn that he has downloaded and then some that was sent from a gay friend of his out of Rhode Island... and I have called and talked to a few of his friends, who have been good friends of his most his life, and they are dropping suttle hints, like "well he hasn't exactly been a saint",,and none of them are acting a bit surprised.... so now I don't know what to believe...

All i know right now all Iknow is that I have to keep going for the kids. I am doing all I can to keep things calm and quiet for them and as normal as possible. They know dad is sick, but think it is cancer, they do not know it is aids... they are only 4. 8. 10 so I think they are too young to understand about aids.. but they were there when their nanny and pappaw died of cancer, so they understand it a little more.....

First time here

guilt cuz new dx RA

I was diagnosed in August 2004 with Rheumatoid Arthritis complicated by Fibromyalgia. Now I am living with the guilt of changing the lives of all of my family members due to my illness. &nbsp

&nbsp

All I could think of when the Rheumatologist diagnosed me, all I could hear in my head was Dr. Phil saying "This is going to be the changing day of the rest of your life". Boy did my life change! &nbsp

&nbsp

I had been suffering for months with so much pain it was unbearable. I would get up in the morning and not be able to move for sometimes hours. When my feet hit the floor they would scream in pain. I would have to stand in the shower for 30 mins in hot water just to be able to get mobile. I finally had a diagnoses as to why, but boy what a downer. &nbsp

&nbsp

I had owned my own bookkeeping business, but I could no longer keep up with it as I did not know from one day to the next whether I could get out of bed, whether I was going to need to eat 10 Tylenol 8 hours or go to something stronger like morphine. I was falling down on the job and it was time to let it go. Now I have caused my family financial hardship. Huge Guilt!! &nbsp

&nbsp

The side effects of all the medications they have been trying, from Prednezone to Plaquinil and no relief but tons of side effects. Nausea, dizziness, drowsiness, stomach problems, not to mention the hair loss and I am only 40! More Guilt. &nbsp

&nbsp

I have to ask my teenage kids (17 & 19) as well as my Mom and my Husband to do or help me do all the things that I used to do, make meals, clean house, shopping, laundry...you know all the things Mom's do...and some days I have to have my husband help me get dressed. I can't drive any more because of the reduced movement, pain and the drugs that I am taking so errands are left to my husband and teenagers. There is a lot left to my children because my husband works shift work, 12 hour shifts, 3 days, 3 off, 3 nights, 3 off, 3 days....this means that when my husband is on nights he is sleeping all day and working all night, and these days even more is left to my kids and Mother. Astronomical Guilt there. &nbsp

&nbsp

My daughter had a nightmare that she had no friends because she was spending all her time doing things for me....Monstrous Guilt!! &nbsp

&nbsp

Before all this began in January of 2004, my husband and I were HUGE golfers, skiers and hockey fans. We golfed every week, skied all winter and spend evenings at the hockey rink to cheer on the home team! We had planned to spend our retirement in a motor home visiting every golf course in North America and then buying an apartment across from the hockey rink when traveling was no longer an option. Well needless to say I have screwed that up. I can't golf, the ski's are gone and I can't go to the hockey rink because my joints can't take the cold. Without my income we will never be able to afford the motor home to travel in, and it is almost a necessity because my Rheumatologist is 8 hours away and I can't sit in the car for longer than 30 - 60 minutes at a time. This makes the 16 hour round trip a 3 - 4 day event because I need to lay down so much. The motel and meal bills are killing us with only one income, but we can't remedy it because we only have one income now, how Ironic!....Mountain of guilt here! &nbsp

&nbsp

People stare at me because I am 40 walking like a 90 year old, I feel like sometimes my family are embarrassed at the stares...even more guilt. &nbsp

&nbsp

I just don't know how to live with guilt. My husband, children and Mom all tell me not to feel guilty that they love me no matter what and they don't feel like I am putting too much pressure on them, but I see the glances, feel the pain when they roll their eyes when I have asked them to help me with something that means they have to stop doing what they want to do. I feel terrible always saying, "Would you mind?" "Could you please?" "I need help with ..." "I just can't do it today I am in so much pain"....and so on and so on. &nbsp

&nbsp

Between my illnesses and the pressure of putting so much onto my families shoulders, I am feeling like I carry guilt the size of the world on my shoulders. I am a Christian and I do pray and I try to put these worries into the hands of the Lord, but it just isn't enough. &nbsp

&nbsp

I would appreciate any comments about how to make this guilt more bearable or how to take the extra pressure off my family. &nbsp

Guilt over new Dx RA

Dear Melitta

I am so sorry of your new diagnosis of RA. I have been diagnosed with Lupus for 13 yrs. I know how you feel about feeling guilty making your family suffer too over your illness. I have been on steroids
and chemo since diagnosis. I am 55 yr old an RN who works part time 30 hrs a week, has a 16 yr
old son and husband. When I'm having a flare up some times I can't function normally. My brain
doesn't work right, I am a Case Manager for a managed care co. I am no longer able to do bedside
nursing due to my illness. Chronic diseases impact every one not only the patient. but famly, friends and employers. I find If I'm open
and upfront about my illness to my employer and family I get a better response to help me when I
need it. People are very receptive to help if they know you really need help and when you are better
you'll function on your own. I know we don't want to be helpless and dependent on others but sometimes you have no accept help when you need it. I find support groups @ my church are also helpful. Keeping my mind busy and as active as possible also helps. and faith in God to see my through the hard times. God Bless you. I will pray for you

Guilt over illness

I am so sorry of your new diagnosis of RA. I have been diagnosed with Lupus for 13 yrs. I know how you feel about feeling guilty making your family suffer too over your illness. I have been on steroids
and chemo since diagnosis. I am 55 yr old an RN who works part time 30 hrs a week, has a 16 yr
old son and husband. When I'm having a flare up some times I can't function normally. My brain
doesn't work right, I am a Case Manager for a managed care co. I am no longer able to do bedside
nursing due to my illness. Chronic diseases impact every one not only the patient. but famly, friends and employers. I find If I'm open
and upfront about my illness to my employer and family I get a better response to help me when I
need it. People are very receptive to help if they know you really need help and when you are better
you'll function on your own. I know we don't want to be helpless and dependent on others but sometimes you have no accept help when you need it. I find support groups @ my church are also helpful. Keeping my mind busy and as active as possible also helps. and faith in God to see my through the hard times. God Bless you. I will pray for you

sincerely

shirley

Dearest Shirley,

I can't thank you enough for your reply, kind words and prayers.

I am hoping that one of these days they are going to find a medication that will ease some of the guilt by making me more self-reliant, and until then I am really trying to ask for help without taking on guilt.

I will also keep you in my prayers in hopes that pain free days out-number the others.

Family Members with aids

My husband was diagnose with late stages aids (not hiv, but aids). We have been together for 10 years. I have been tested and am negative and so are our children.&nbsp

I am hurt and confused, and it is just absolutely killing me that he doesn't care that he is putting himself in the grave any sooner by drinking and smoking,, He is a 12 pack a day. People ask me how he gets the beer and the money to get the beer,, well yes I have been buying it for him.. other wise he would get in the car and drive around until he found a family member or friend to buy it for him. and I can not let him do that. That is the only car we have and I rely on it for my livelihood and to support my children. and plus I wouldn't want him to be in wreck.&nbsp

Everything, absolutely everything has been placed on my shoulder, and I am about to go nuts......He is constantly falling, willnot take his medications with out constant fuss. I have no help with the house work, or the kids,, I am working 35 hours a week, just able to pay rent, lights and gas for the car and absolutes for the house and school for the kids...there are no extras.. we are waiting on his disability to come through, &nbsp

I now live in constant fear, of contacting aids, it has gotten to the point that i cannot bring myself to sleep in my bed with him anymore, so I sleep on the couch. for all of the whole 3 hours of sleep that I get... When I leave to go to work, I do kiss him goodbye and tell him that I love him. But right now I am just so hurt and furious with him,, it is hard to be in the same room with him..&nbsp

Am I wrong to feel this way... He swears that he did not contact this by sexual contact,, that it must have been by a tattoo or body piercing.... But there have been instances over the past couple of years that i have found gay porn downloaded on the computer and saved in files,, which of course send up red flags,, and plus several of his friends are gay and/or lesbians.... So I don't know what to think....&nbsp

Author with inoperable cancer

I'm writing about a friend of mine. His name is Joe Waters and he recently finished a book titled "The Waters Trail". He wrote this book to his 3 year old son.

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Here's the sad part...just about 2 weeks Joe was diagnosed with an inoperable brain tumor and is at
Holy
Cross
Hospitalin
Silver Spring, Maryland. The doctors are not very optimistic. He and his wife just had their second child, a baby girl.

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From surviving domestic violence as a child, serving in Desert Storm, completing college, dealing with anxiety disorder, raising a family and having his book published, Joe has led an amazing life and has touched many people. My family is among those people, we live in
San Juan Capistrano, California, where Joe lived for a number of years. Joe spent a lot of time at our house, hanging out and having conversations with my father, who he mentions in his book. So you can imagine how close to home this is hitting our family.

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I feel helpless. I thought this was a good way for me to channel my anger, sadness and stress about this whole thing. Share the knowledge. Let people know. His book will touch their hearts, perhaps guide them through their own life.